Yesterday was Chris`s appointment to see the gastro Doctor. It had been brought forward from September and it was another trip to Truro to see him. The first thing that surprised us was how thrilled he was and I mean he was REALLY thrilled, that Chris was coming to see him at this stage of his MND. He said so many people left it till much later and there were so many more complications. He said they wanted to do the PEGs earlier, but the neurologist and other professionals weren`t advising people to do it. We told him that all the professionals Chris had seen had told him now was the best time and he was pleased to hear that mindsets were changing. He explained about the two ways it is put in, one way is with the radiology team using X rays to guide the tube I think and the other way is the endoscopy way, where they put a tube down your throat with a camera on it. He said the latter was the best way and that Chris should also opt for a general anaesthetic as there can be aspiration problems during the sedation route with MND patients and that they (the doctors) can control the breathing better under a GA. He then said it could be done within 2 or 3 weeks which really surprised us, but he explained that they had to get all procedures done for everyone within 6 weeks these days. He then talked a bit about what it will look like. He also explained that there were two main risks with having a PEG fitted. One was infection, but it was the patient infecting themselves as some people can carry MRSA in their throat and the endoscopy going down can carry the infection down with it. They counteract this by giving antibiotics before the procedure and they also took a swab yesterday to see if Chris is carrying it in his throat. If he was he said they can do something at the time to knock the bacteria out during the process. The other risk is bleeding, which can happen if putting the PEG in is left till much later on and the patient is malnourished. He said their Vitamin K levels can be low and this vitamin helps with blood clotting. Chris is still getting a very varied diet so hopefully that won`t be a problem, but they took some bloods to check that anyway. Phew!! such a lot to take it, writing this all down helps keep all that info in the head. Before Chris left the doctor also said that he would also stay in over night, just to make sure the tube was flushing OK and we would both have to learn how to use it. One thing that made me smile though and I forgot to say that the doctor was Scottish, was that he asked Chris about his alcohol consumption and Chris said he liked a large whisky at the weekend. I saw the doctor smile and he said a large whisky was perfectly acceptable and Chris was pretty pleased with that.
The biggest annoyance when visiting the hospital though, apart from the hour it takes to get there, is the cost of the car park. Last weeks visits cost over £8 altogether and today it was over £5. Those charges are way too high. I feel sorry for people who have to visit hospital daily for treatment or visit people. Even a weekly ticket is over £15. Still, I digress. We have to use the wheelchair to get to the hospital as it is too far to walk for Chris, but on the way home we wanted to stop off at the Range to buy a couple of bits. (I`m making up a hamper of Cornish goodies for a raffle for our MND stand on Saturday.) Chris didn`t want to use the wheelchair again, so we took a tip from his MND nurse and he used a shopping trolley as a giant walking frame to support him as he went round. It worked pretty well and made Chris feel `normal` again.
I was very humbled yesterday at some of the comments people have made about my Blog. I never really know what to say as they are so unexpected. I`m just this shy person who wouldn`t normally say boo to a goose, but this disease, as bad as it is, does have a way of firing people up including me. It makes you want to do something positive with something that is pretty low on any kind of positives. Raising awareness and fund raising are two big ones within all our grasps. I just write what I feel, it isn`t hard, or brave for me to do this and sometimes I think I write too much, but I appreciate every kind word that I`ve read so thank you. MND was the last thing we would ever have wanted to enter our lives, but it has also allowed me to get to know some wonderful people because of it and if I ever get my husband into social media (I`m trying) then he can get to know them too.
